“Way forward for the Caretakers of children with Neurodevelopment Disorder”

[Pooja Rana (Maya)]

The First Signs

When a child is born with a neurodevelopment disorder, everything may seem normal at first. For the first two years, parents often don’t notice anything unusual. Slowly, they begin to see the delays in child’s development.

Worried and confused, parents search for the answers for delay development. They visit doctors, hospitals, shamans, and even temples for cure. After many attempts, they finally learn the truth: their child has a neurodevelopment disorder.

What Does This Mean?

For many people, this is an unfamiliar term. Neurodevelopmental disorders are conditions that affect the brain development and function. They can cause difficulties with learning, communication, social interaction, movement, and behaviours.

Examples include:

• Autism spectrum disorder
• Cerebral palsy
• Attention deficit hyperactivity disorder (ADHD)
• Intellectual disability
• Down Syndrome
• Tourette Disorder etc.

Each condition is different, and each child’s brain functions in its own unique way.

The Emotional Impact on Families

The joy and excitement of having a child can quickly turn into stress and confusion. Relatives who once believed the child was a blessing may begin to think differently.

Mothers, in particular, often face blame. Some family members believe the child’s condition is the result of sins or curses from a past life of mother. A once-happy home can soon become filled with guilt and conflict.

And who suffers most? The child and the mother.

Struggles of Caretakers

From my five years of working with children with neurodevelopmental disabilities, I have seen how much pressure families endure. Caretakers feel they must meet society’s expectations and make their child appear “normal.”

But in this process, they face many struggles:

• Relationship challenges — often with in-laws or spouses
• Financial stress — difficulty affording medicines, assistive devices, and nutrition
• Mental and emotional strain — exhaustion, depression, and frustration
• Discrimination and exclusion — rejection from society

Many parents slowly lose themselves while trying to keep up with social stereotypes. Their own dreams and hopes fade, while society continues to criticize instead of offering support.

A Way Forward: The SALT Approach

From 18th to 20th August 2025, I got an opportunity to attend three-days relationship-building program which was organized by Global Fund for Children, where I learned about the SALT approach. This raises an important question in my mind: How can I help the caretakers of children with disabilities so they don’t feel alone in this journey?

After this program, I felt that SALT conversation could truly help caretakers navigate their challenges. While it may not remove all difficulties, it has the potential to give families the courage to move forward with dignity and strength. By listening to caretakers, appreciating their strength, and supporting them in practical ways that can bring them hope.

[Rituu B. Nanda]

I see a hope in you Pooja for family members of those with disabilities as valued as any other families. Am glad to know you!